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Antiretrovirals?

Discussion in 'General ME/CFS Discussion' started by Sparrowhawk, Aug 21, 2013.

  1. Sparrowhawk

    Sparrowhawk Senior Member

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    I'm still reading through the site, second week of vacation and I have had a lot of time to steep in all this great information.

    One thing was keeping me up last night, aside from the usual, and that is I keep bumping into references about some CFS/ME folk trying and benefitting from antiretroviral meds. I read the summary on XMRV and get that was a dead end. But why in that case would antiretrovirals do anything at all positive for people with this condition? Example is this doctor and her daughter, http://www.x-rx.net/blog/

    There also seem to be some politics around this question so pls forgive me if I'm treading old or tired ground.

    This may be a lot to ask. But if one of the more technically minded among you either provide a thumbnail overview of this, or - as it may be - simply confirm as George Carlin used to say "well, son, it's a mystery." I'd appreciate it.

    Many thanks in advance.
     
  2. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Hi Sparrowhawk,

    If you do a search of Jamie's blog, another doctor (damn, can't think of his name but others may remember) gives a shot at an explanation. He is also taking anti-retrovirals.

    A few here have also taken them (mostly during the XMRV period) but, as I recall, most did not do as well on them as Jamie and her daughter. It is probably that "subset thing."

    Best,
    Sushi
     
  3. Sushi

    Sushi Moderator and Senior Member Albuquerque

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  4. SickOfSickness

    SickOfSickness Senior Member

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    Dr Jamie has written about various types of retroviruses we could be infected with. And ways we could get infected. The main one is vaccinations where they used cells from live animals for some reason. She said something about them using brains to filter out something before they give the vaccination? I am not too clear on it, but in many posts she has links about these things. So if most of us were injected with cells from mice (or monkeys, or others) they could have mutated or interact badly with our immune systems.
     
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  5. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Some retroviruses have activity against her4pes viruses as well. From memory isentress was one that works against the herpes viruses. Not saying thats how they work in cfs but its a possibility??
     
  6. anciendaze

    anciendaze Senior Member

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    What heapsreal means above is that some antiretroviral drugs have general antiviral activity. Isentriss (raltegravir) is one such. Besides HIV, it has shown activity against cytomegalovirus and possibly other herpes group viruses like EBV or HHV6.

    This works the other way round also. Some antibiotics have antiviral and even antiretroviral activity. I considered this when I saw reports that minocycline had reversed symptoms in recent-onset schizophrenia. Unfortunately, minocycline is also a drug of choice for treating neuroborreliosis and toxoplasmosis, both of which show a correlation with schizophrenia. This means we might be unwittingly treating infection by: parasites, bacteria, viruses or retroviruses. Doesn't narrow the field much.

    Perhaps the weirdest off-label use I've seen was use of famotidine (Pepcid) against schizophrenia or cimetidine (Tagamet) against HIV infection. Even the familiar mood stabilizer lithium salts used to treat bipolar illness reduce viral loads in HIV infected patients. Feel depressed without mania? The well-known antidepressant Prozac (fluoxetine) strongly inhibits the coxsackie B enterovirus. An internist I reported this to was interested, not because he is especially concerned with depression or ME/CFS, but because he has no specific drug to treat enterovirus infections.

    Nothing limits off-label use to poorly-defined mental illnesses. Here's an example of use of an HIV drug against a cancer with very poor prognosis using existing treatments.

    Just as more food for thought, has anyone else noticed that a long list of antidepressant drugs in a variety of classes have negative immunoregulatory effects? They could be reducing immune response to a hidden infection, which improves symptoms without stopping the pathogen. Long-term use might even advance the pathology which provoked the search for symptomatic relief.
     
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  7. lansbergen

    lansbergen Senior Member

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    That is the risk I am taking with using the immune modulator.
     
  8. ukxmrv

    ukxmrv Senior Member

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    That's interesting Anciendaze, thanks for mentioning Antidepressants. When I was first diagnosed in the 80's I was told that the first AD's were found to have immune modulating good effects and some patients were convinced to take them for that reason.
     
  9. anciendaze

    anciendaze Senior Member

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    Here's a reference I didn't have handy before on antidepressants and immunomodulation. Many of the unpleasant aspects of infectious disease are due to inflammation, which is part of immune response to the pathogen, not a direct effect of the pathogen itself. In general, antidepressants reduce production of proinflammatory cytokines.

    Early work on antidepressants started with clinical trials of an experimental drug for treatment of tuberculosis. Careful laboratory measurements showed no effect on infection, but patients reported feeling better.

    There is a background to this which is seldom mentioned. The reason for the careful investigation of pathology in this trial was a disaster in even earlier trials which used steroids to treat TB. This did reduce the unpleasant effects of inflammation, but it also allowed the bacteria to run wild. By the time of the linked article, this was already history which was in danger of being forgotten.
     
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  10. anciendaze

    anciendaze Senior Member

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    Just want to add a comment about "good drugs" vs "bad drugs".

    With the possible exception of nerve gases, there are no completely bad molecules. Anything which will not kill you quickly may have a legitimate use in some context.

    When I talked about steroids above, I did not mean you should stop taking these under any circumstances. I have known people who died of asthma. If you don't make it through a crisis, your long-term health is nonexistent.

    The same can be said for antidepressants. I have known people who committed suicide for reasons that did not make any sense in a slightly longer context. Support to get them through a crisis, and a few months of antidepressant therapy, would have made a vital difference.

    Even a thoroughly bad drug like the antipsychotic haloperidol may be useful to bring down heart rate and blood pressure in an emergency. Sometimes it is simply not possible to explain the situation to a patient who is excited and disoriented by a medical problem plus unfamiliar surroundings.

    That internist I mentioned was enthusiastic about finding that fluoxetine had antiviral properties because from his standpoint the adverse reactions were far less than he might expect from other treatments. Widespread use of Prozac meant it was very well tolerated, as far as he was concerned.

    This is not the same as making it a "good drug". This kind of thinking leads people to the idea that if a little is good a lot must be great. (People also assume without proof that good properties are additive. This is the fundamental principle of linearity, which is typically violated in biochemistry.) It is not terribly unusual to find medications which produce opposite effects at different doses.

    The two things to keep in mind are context and alternatives. There is no drug which can always be safely used without thinking.
     
  11. Hip

    Hip Senior Member

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    Yes, the anti-retroviral drug Isentress (raltegravir) may be effective against all herpes family viruses (including HHV-6, EBV, CMV, herpes simplex virus, varicella zoster virus).

    This could explain why raltegravir may be helpful for ME/CFS.

    Pity raltegravir is so expensive, otherwise I'd consider trying it (for its anti-herpes virus action).
     
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  12. Sparrowhawk

    Sparrowhawk Senior Member

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    Appreciate all the responses on this thread so far, I'm learning a great deal and this should also be a good ref for others with similar questions.

    So with the above said about raltegravir, is any Dr currently prescribing it? When I was at my appt with Dr. Kogelnik a few months ago and asked in all ignorance why folks with HIV are essentially walking around medicated but healthy -- but we with Cfsme have these viruses running amok, he seemed to indicate antiretrovirals were damaging and not appropriate. That gets to the point above about immune dysfunction and symptom cessation. My concern is every day I don't treat the viruses are getting in more of my nerve cells, we though I don't feel worse every day I am in a slow gliding decline as far as I can tell. So is raltegravir MORE risky and toxic than Valcyte, which itself per Dr. K. Is also toxic, has at best 30% efficacy so far with no proof of long term remission even for those 30%?

    What I'm getting at is, if someone said to me today "I can get you symptom free for the next five to ten yrs, with antiretrovirals, but after that the toxicity will probably overwhelm your system." I might find that pretty compelling. I know many living with HIV have a lot of othercomplications so please underastand I am not trying to minimize their situation. I'm just trying to draw a comparison of functional capacity versus toxic risk longer term, aligned with the good discussions above.
     
  13. anciendaze

    anciendaze Senior Member

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    I want to make it clear that I am not advocating antiretrovirals as a general treatment for minor diseases. What I do want to say is that there was a subset of patients, between 10% and 20%, who definitely appear to have benefited from them. I'm still hearing from such. This should be enough to spur research. (We need to find out why something worked, in a situation where so many therapeutic options fail.) Scarcely a week goes by that I don't learn of some new off-the-label application of drugs which are already approved. It would help if we really understood why some of these things work.

    Successful use of ARVs to treat some cancers causes me to wonder if some people diagnosed with ME/CFS or mental illness may be in a prodromal phase of a very serious disease. We already know of a number of examples in which preliminary laboratory signs may extend back a decade or more before clinical diagnosis. This doesn't mean everyone in this condition will develop the full disease, but it certainly suggests there may be a point where a minor intervention can stop a major disease.

    Sparrowhawk,

    Valcyte is only one drug effective in reducing measured viral loads for EBV, HHV6, etc. Reducing that load is the important point. There are several other options which may be more tolerable. At this point I would pursue the idea of reducing that load cautiously, over a period of months. ARVs might have had their effects on ME/CFS patients, as stated above, through their effects on ordinary viruses. I would also check for levels of vitamin-D, which is drastically reduced in many ME/CFS patients for unknown reasons, and autoantibodies against thyroid. The goal should be to stop that decline and stabilize you until better options come along. In the current state of ignorance any treatment must be considered experimental.
     
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  14. Sparrowhawk

    Sparrowhawk Senior Member

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    anciendaze thanks so much for the informative response.

    On this bit: "Valcyte is only one drug effective in reducing measured viral loads for EBV, HHV6, etc. Reducing that load is the important point. There are several other options which may be more tolerable" I would love to hear more about what you consider strong / viable options that may be more tolerable. In talkng with Dr. Montoya my PCP asserted something along the lines of what SOC has said here on the forum, that he feels Valtrex is not as effective now as it may have been in the past (e.g. is EBV becoming resistent, for instance? Can viruses do that like bacteria beceom resistent to antibiotics?). When I met with him the second time, Dr. Kogelnik seemed to be saying Famvir was too lightweight, if I understood him correctly.

    While considering things that may nudge me in the right direction (LDN, GcMAF, MTHFR supplementation, etc.) I do feel the two major paths I must consider for possible resolution of this condition are mercury chelation and/or antivirals. On the latter, I was hoping to try an herbal antiviral first -- but the recent thread on Chaparral and liver damage has me reconsidering that option. Isatis has been used in TCM, Lomatium is part of the SouthWestern US herbal tradition but not much is known about long term use.

    Thanks again.
     
  15. anciendaze

    anciendaze Senior Member

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    I'm not going to second guess Montoya, he is one of the best. What I want to emphasize is that there has been a problem from the beginning in doctors reaching for a "bigger hammer" to get results quickly. The first trial of acyclovir had a patient with a dangerous response because the doctor didn't realize that maintaining hydration was especially tricky for ME/CFS patients. Dr. Lerner was willing to treat for several years to get results, keeping dosage down to where it was tolerable. If you can't tolerate a drug its effectiveness is irrelevant. I feel sure that Dr. Montoya is careful about this, but other doctors blindly following a protocol may not be.

    It may be that no single drug will do, and we may end up with a "cocktail" of several drugs with synergistic action against pathogens at dosage which patients can tolerate. Right now we don't know what a particular patient, you, can tolerate. It makes sense to start low and titrate up to find out. If you can tolerate powerful medications there is no need to fall back to others. If you have problems on one schedule of doses, it may be possible to sneak up on a therapeutic dose more slowly, even with the same drug. If you can't tolerate one drug at all, you may tolerate others. There will be trial and error because this is still experimental.

    Even if I had a license to practice medicine I would still hesitate to go into more detail. Without the kind of flexibility I am describing above almost any protocol will fail. What published material demonstrates is simply that bringing viral loads down often benefits patients. We don't even know which virus is most important.

    As an example of the kind of unintended effect of a drug labeled for a particular use may have, consider this: acyclovir has antiretroviral activity as a reverse transcriptase inhibitor, but only in cells which are dually infected with a herpes virus like EBV and HIV. Remember, I am talking most about this particular drug simply because it has been around longest, giving the most published information. If the best understood antiviral presents such surprises you have to consider our knowledge of more recent drugs more uncertain.
     
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  16. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Yes i think its going to be a combination of drugs that we will need to treat us. Something for the infections as well as something for the immune system and then symptom management, there would be more areas but that i think is the nuts and bolts.

    I wonder also if a combination of famvir and valtrex would have an effect on hhv6/cmv/ebv as its getting at them from 2 directions. Just a thoughto_O
     
  17. Sparrowhawk

    Sparrowhawk Senior Member

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    Thanks again anciendaze. Immanently sensible, all of your above and especially am resonating to your below.

     
  18. anciendaze

    anciendaze Senior Member

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    Think you mean eminently, as I don't want to claim theological attributes. ;)

    As I've said above, antiretrovirals may be working as ordinary antivirals. For that matter a number of ordinary antivirals seem to have antiretroviral properties in some contexts. This may even be true of some antibiotics with antiviral properties. Even cimetidine (Tagamet), a histamine H2 blocker, has been shown to have antiretroviral properties. If we knew exactly what we were treating this confusion could be reduced quickly. Until that happens we need to play things by ear.
     
  19. Sparrowhawk

    Sparrowhawk Senior Member

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    Hah! You're right that's what I meant. Thanks for the correction.

    Yep that's about the size of it. I might even go so far as to say, that's eminently sensible!
     
  20. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    i would be tempted to try isentress if the dam thing was cheap but its like $1000 a month. The problem with anything antiviral is they dont kill the virus but just lower the viral load so we need an immune system to take over once the antiviral does the job??
     
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